Category Archives: Living with Chronic Illness

This time last year, I left this post unpublished…

Jan. 26, 2014

Good news = This winter has not been as unhealthy as last year. Last year I was in bed for most of the winter, experiencing intense and daily pain, incredible fatigue and a sense that it would never end. This year, I am able to function most days. I have not had the pervasive fatigue and pain. While I have some very serious ups and downs, I am so incredibly thankful that it is not as all-consuming as it was last year. I have to be very careful that I don’t overdo it for too long. I revel in my good days. I seriously do too much on those rare days but for most of this season, I have days I get up, I teach school, make meals and function.

Bad news = I have had these spells that make me dizzy and cause half of my body to “fall asleep” so much more often than it had been.

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Finding the words

I haven’t written much lately. You may have noticed. I’ve had trouble finding words. That’s not normal for me.

While I am super stoked that I made it through the winter and pretty much accomplished my goal of not complaining about the weather ALL WINTER. Woo hoo! I never promised a Spring complaint fast…but I’ve been doing well. Caught myself once or twice. But seriously, it doesn’t help to complain so I swallowed it. You know what? I think it made it feel like the cold weather passed more quickly. Also, I didn’t look at the tropical pictures people like to torture others with. That helped too. I especially am NOT Looking at them this week. It helps me not complain ūüôā Of course I had to torture others last year when we went to Jamaica, so all is fair in love and holidays.

While this winter was, by a thousand miles, better than last winter it was another kind of painful for us. Last winter (2012-13) was a long and dreadful winter filled with pain and fatigue that I have NEVER experienced the like of before. I spent days, weeks and months begging God to take away my pain and to allow me to get back to “normal”. My normal is a healthy person’s sick day. God has been so amazing in giving me the strength for many years. I wonder, at times, if I went so hard for so long that my body just up and had to have a reboot. I entertained thoughts I had never thought I would¬†let jump around in my head. When your body is that rebellious your head starts to think crazy thoughts.

I am thankful that I had family and friends who put up with the nutty talk and prayed me through it. The Reverend still has a little PTSD from how hard it was for him. On my bad days, this winter, he had the look of sheer terror in his eyes. I know that he was a super hero and got this family through some of the most difficult times we’ve¬†faced. On those days he wondered if this time it (my inability to deal with life) was back again. I’m thankful to say that, for the most part, those days lasted only a few days at most. It was never as intense as it was before.

This winter was different. Oh man, how thankful I am for that! I can truly say that God has allowed me to see a bit of the normalcy back, though I am far from what I used to be, even still. I think part of it is that he worked on my heart so much that I just am NOT the same as I used to be. None of us are. The “Bad Winter” was a changing time for me spiritually, physically and mentally. I cut out food that was making my body more stressed than it had to be. I started running (OH MY WHAT¬†A MIRACLE!!). I had friends urge me to think outside of my spiritual box that I had put God in. God worked through it all. Wow!

I am healthier in so many ways.

But…then there is a different sort of pain.

The pain that people in ministry are not supposed to talk of. The type other people cause.

I had a feeling that something was coming. Call my weird but it’s true.

The church we are in has been so amazing and so full of grace for us as a family. We were growing, thriving, excited. I felt like we were on the cusp of something amazing for our little community. I still do. I think God is up to something. But that makes Satan (and yes, I think he’s working hard) upset. When the people of God are on fire and full of purpose¬†there is sure to be backlash. He doesn’t want people to be victorious. He doesn’t want people to be SAVED. He doesn’t like people to feel the love of the Father for his created.

And there has been backlash.

And that’s all I can say. It’s been tough in ways I can’t speak of.

I know that the battle is NOT lost. I know that there are incredible things happening in people’s’ hearts around this place. If the battle is this fierce, then it must be something crazy good. I see the seedlings of something.

Just wait. It’s going to happen!

 

 

March Madness!!

All winter I’ve been waiting for this month! The month where everyone complains about the Canadian Prairie weather and I will be tested in my resolve to stay positive for the first March since, well, probably since I moved to the wide open prairies. I promised myself and God that I would not complain about the weather. I was very specific about that. I didn’t say I wouldn’t complain at all ūüôā but about the weather? Nada negative word would cross these lips. I think I’ve almost done it too.

You see, right here where I live, March is NOT spring, almost never. Winter drags on longer here than a rash on a baby’s bottom. Oh sure, we get tricked¬†into thinking that the snow will be gone soon by the weather forecasters promising a week of above zero temperatures. It makes us all a little loonie. We have a few days of melting, then kabam! it’s the Blizzard of the Century and temperatures at record-setting lows for the first time in history.1960095_10151932139966190_238625747_n

I’ve caught on to the prairie winter¬†weather thing¬†now. It’s only taken me two decades. I’m not fooled this year! And that’s why I’m so darned positive. I moved here willingly, along with my man, and here we are going to stay for as long as the Lord sees fit. I keep trying to convince Him that we are supposed to move to Mexico, or Jamaica or Hawaii but so far it’s a no go. In fact, I’ve met some people from other HOT and tropical lands who chose to live HERE¬†and they are NOT complaining about the weather. If someone who grew up in the tropics or desert can handle these harsh winters then certainly a born and raised Canadian can too! This is a fabulous country and I chose to live here. I am dealing with it! Life is good here too. I have a warm house, a loving family, a peaceful country and friends that make life wonderful.

I won’t complain about the weather. It’s been sunny and cold and I am not down about it. It’s SUNNY!! Yipee!

But the ups and downs in weather have my body in a cranky mood. My spirit is light and happy but my body is in a very dark place. The ups and downs in barometric pressure as the cold and warm fronts make their way into and out of our lives test me. Oh my do they test me. That’s why I promised not to promise about never complaining about my body and it’s cranky old ways.

It goes to show you, fibromyalgia is NOT all in the mind because, besides the hormonal mood swings of peri-menopause, my mind is GOOD. I feel great about getting through winter with God’s strength and positive outlook. I know that determining to not dwell on the negative and instead dwell on the¬†positive my outlook about winter has been awesome. I get those long johns on those cold days and¬†I wrap myself up so I don’t feel the cold as badly.

You see? It was in March that I married the man I still love passionately, the month that I welcomed two of my babies home, the month that other dear family members have birthdays in. Easter is sometimes in March, though, not this year. It’s a time of getting through the last of the challenge of winter and moving onto the hope of spring (sometimes) and it’s just a good, all around month.

It’s MARCH!! Yipee Skippy! I’ve made it through most of the winter and soon it will be spring. Even if it last through record-breaking months or weeks. Last year was the longest one ever so chances are spring IS just around the corner.

I am not going to wish I was somewhere else this last bit of winter! I will be thankful for a WARM house and HOT water. I am incredibly thankful for the way God has provided for us so that we can have a great March! We get to have 2 birthdays, an anniversary, another big 50th anniversary celebration (my in-laws!!) and many other special times this March.

It’s ok if March came in like a lion. It’s ok if it doesn’t go out like a lamb! It’s going to be spring SOMEDAY and that someday is closer than it was last month.

The only March Madness I will feel will be the birthday party and anniversary celebration prep and all it’s insanity. But even then, we are celebrating people we love and I am thankful for them.

I love March!

Ehlers-Danlos Syndrome

Just what is that strange word I put up there in my title? It may be the answer that I have been¬†looking for all these years. It may be the “thing” that will make my life make more sense. The “Aha” in the mystery of what has happened in my body all my LIFE. The answer to the Fibro and CFS that I’ve endured for decades at an ever-worsening rate. It may be the answer to “WHY?”

“Why are my fingers so crooked, Mom?” I would ask. “I don’t know, dear, it’s just how you were born.” I may have shown off my incredibly flexible joints at that time because those fingers, as crooked as they are could move into contortions that would make some feel nauseous. the rest of my body is and was hyper flexible from the very start.

“I have these shooting pains that happen randomly through my body, Mom. What is that? Is that normal?” She would typically reply. “I don’t know, but it could just be your mind playing tricks with your body.”

“Dr. why am I losing so many babies? Is there something wrong with my body?” The Dr.’s answers went something like this: “We have run all the tests to see why these miscarriages are happening to you and we see nothing to be alarmed about. Maybe it’s just your body’s way of getting rid of embryos that have something wrong with them.” After losing Josiah and then three more pregnancies, the Doctors remained stumped as to why I was not able to carry a baby to term. They just couldn’t find a reason.

“Why do I have several organs that are malformed and not working like they should?” Shoulder shrug.

“I am just so tired all the time and feel like I just can’t function. My body hurts so badly sometimes I want to scream.” Doctors would imply “It’s all in your mind.” or say “We are diagnosing you with Fibromyalgia because of the chronic pain and Chronic Fatigue Syndrome because of your fatigue.” And then just give me a list of things I could try that may or may not work.

Finally, after years of suffering I think I had someone has given me a lead into what could very well be the answer!

Ehlers-Danlos Syndrome. A rare genetic condition that my cousin was diagnosed with a few years back. It usually runs in families and she was kind enough to send me links of information that I could gape at. I gaped because it described what I thought was quirks and deformities and odd qualities about myself and made it make sense. It was an “Aha!!” Moment. I am convinced that this syndrome is actually why things in my life have been painful, strange, and tiring since the beginning of my memories. All my life, I have felt that much of my pain was all in my head. When I would get sick, it was in my head. I felt like I had to explain that what I wasn’t just faking and that it wasn’t all in my mind.

Ehlers-Danlos Syndrome has some specific characteristics. There are a few different types of the syndrome and so the symptoms vary some from person to person, but there are more common symptoms which are taken by observation and put on a scale to narrow down the possibility of having it. Genetic testing can be done and I¬†have been referred ¬†to a specialist. I’ve waited a good long time and hope our health system can show me a favor by getting me in after waiting more than a year.

There is a test called the Beighton Scale, is a list to verify hypermobility of joints. It is said that if you can do a certain criteria of hyper flexible moves then you are officially at risk for Ehlers-Danlos syndrome. It is one of the main criteria for diagnosing Ehlers-Danlos Syndrome. I’ve done the scale myself and find myself¬†with the score ¬†of “Um Yah, you have this genetic condition.”

There are SO many of my symptoms that didn’t make sense before and now make sense that I am not even doubting, before genetic testing, that my¬†ancestors handed down this lovely syndrome for me to enjoy and call “Fibromyalgia”. It helps make my life, my pregnancy losses and other things make sense right down to my crooked fingers and velvety skin! ūüôā

Why is this important to know at this stage in my life? Well, it helps me know that I haven’t been crazy,¬† with all these things going on in my body. It wasn’t all in my mind. It wasn’t because I was an emotional mess. It is just¬†that I have a genetic reason for it. My body was created in this way.¬†It helps Dr’s know how to treat me and to know that there are certain things they should look at when I come in with a list of symptoms. This genetic condition messes with the production of collagen in my¬†body and collagen is in every cell. It can affect many areas of the body in the organs, connective tissues and¬†on.

Knowing that this is the Genetic Syndrome that has probably been with me all my life doesn’t make me freak out. In fact, it’s the opposite. I feel at peace. I was created and born for a purpose. God knew this long before I did. He knows my limitations because he allowed me to be born with them. He is in control.

My journey to writing

Writing on my blog has been on my mind for a while. Why has it taken so long for me to write? I think that God has been working on my heart in regards to my next post and my words were not coming together to make it a cohesive thought.

As a new-ish writer and a hope-to-be speaker and possible humorist (I have some big impossible looking goals,¬†I know) I think to myself, “What could God possibly have to say through me?”¬†¬†What have I got that others, around the globe or even in my province, don’t have? The big question is “Why would God use ME?”

I mean, he has so many other capable people. There are people that actually carry out¬†the things they set out to do.¬†I am not the most goal-oriented person ever. The fact that I have a story to tell, some of it¬†funny and some of¬†it tragic, does not mean¬†I have to tell it. Everyone¬†has a story.¬†Why ME? Why should I write my story when there are so many other stories that are so incredibly moving and inspired by God. He doesn’t need me to write another story of how he has deepened¬†someone’s faith through struggles and triumphs. There are so many great¬†authors¬†who have told¬†their God stories. And just how do I morph the¬†stories of tragedy in my life into the humor that God has given as a gift to lighten the load of the loss I’ve experienced?

I have an inherent problem of thinking I’m not that¬†special. Out of¬†the billions on the¬†globe I will only know a few and only a few will know me.¬†I will live my life¬†for Jesus, I will die, and the world will exist and move on without really knowing I ever came here to make a difference. In the past few years, I¬†have listened to some fantastic¬†speakers and think “Now there’s a gal who¬†has been called by God to speak, has a story to tell and she does it with such grace and wisdom. ¬†I don’t know why God thinks I could do that? It’s just me. Little ol’ Marcy.”

I am currently writing my story and have thought,¬†“Wow, there are so many talented authors who actually went to University to learn how to write well. I can barely spell the word thorough¬†(Nope couldn’t do it. Spell check is my best writing¬†buddy).” I can see why these authors have been chosen to tell stories and write articles and do all the beautiful things they do with words, but me? Why me? Why is he pushing my heart in this direction. Doesn’t he know I only have a couple of years in college? And it wasn’t about writing. I look back on my college papers and cringe, slightly impressed I got the grade that I did.

I’ve said this before….I hated writing. In elementary and high school I couldn’t get¬†my thoughts out quickly enough with pen and paper and¬†often forgot my original thought by the time I had some words written out. I didn’t think I was very good at it, and most of all, I didn’t enjoy it. Enter, the digital age. I didn’t consider writing consistently until my sister said I should write out the crazy antics of my kids into a book. Sure, I kept her in stitches, but write them down? Well, I thought, it can’t hurt to try. I’ll blog. And blog I did. I wrote badly. My technique¬†and grammar was¬†fairly pathetic and my spelling? Whew! ¬†I didn’t edit, I just hit “publish” and there I was, PUBLISHED. Ha!

The thing is, I started to LOVE writing my stories. People liked reading what I was writing. At the very least, my relatives thought I was a hoot. They thought it was entertaining. That was a new thought to me. People actually wanted to read my next post? Who knew?

The next crazy thought, a few years later, was that maybe I should write¬†a book¬†and try to get it published. How hard could it be? Then I went¬†and took a¬†Writing Course at Breakforth in Edmonton, AB where NJ Lindquist was teaching. She was¬†realistic but didn’t crush hopeful writing dreams.¬†I liked her immensely and learned so very much in that one day. She said that 2 out of 100 people who write ever get published.¬† I calculated how many of us in that class would probably ever get published. About 2 of us. I was sitting with one of my dearest friends who writes beautifully, and thought “She’s definitely in, so that leave number 2 spot for me.” So strong was my conviction.

This girl, who thought she was TERRIBLE at the art of words and who¬†could¬†barely put two sentences together in front of a crowd, was being called out by God to do the things she wasn’t qualified to do. Why me? Why insignificant little ol’ me?

I have four children, some of whom have special needs. These special issues take up a lot of my energy. And what do you know? I also have Chronic Fatigue and Fibromyalgia and Arthritis. Just life, as a whole, takes up most of my energy. Just where is God going to pull from to make anything of significance happen with all those roadblocks? Oh, then there is the ministry part. My husband is a pastor and that is an amazing and¬†often demanding job. I just don’t have time or energy for God to have something more for me to do.

It turns out that, a couple of years back,¬†I was sitting in a crowd of 10,000 people at a Breakforth ¬†conference. In the middle of all the noise, people and darkness, God said something directly into my soul. “I see you. I see YOU. You are not insignificant. I the God of the Universe, see YOU in this crowd.” I realized that I was not just one more of those human beings walking around on the planet and who was¬†lost in the middle of¬†a huge crowd. Yes, I was going to squish my way through the crowd and go back home to life as usual., but was it going to be going home to life as usual… really?¬†No, he had something planned for ME. It startled me. Made me weep. The God who formed the UNIVERSE has bigger plans for me? I thought that I was livin’ the dream. I was doing what he had called me to do. I knew that I was. And yet…

I don’t know how he’ll do it. After all, I still can’t seem to get to the computer to write out my thoughts when I want to. My book is taking way more time (that I don’t have) than I thought it would take. I found out I should probably get an agent at some point and then find an editor or two…and I may have to wait for miraculous funds to do all that. That only touches a small part of what it will mean to publish a book and get things rolling.

I still don’t have any large or small crowds that want to hear what I have to share. My church was gracious enough to let me speak last year. They were kind.

Some days I can not get out of bed because my body aches so badly or it needs a break from the strenuous life I lead. It can put me on survival mode for several days to a week. There are days I can barely get out of my pajamas to home school my two kids and see my other two kids off to school.

I don’t know WHAT he’ll do. And maybe by¬†the small steps¬†I am¬†taking now, I am working toward the goal that he has for me. I hope it is¬†so.

I¬†have come to realize this…¬†that it doesn’t matter what I think the timing should be or the venue it should take place at or when I get the book done, it’s WHO am I doing it for? If he plans things for me then he is in charge of the details. He is the One who called me to this strange and unexpected thing called writing. Even if I never did anything else, perhaps his plans for me have been already accomplished.

I know that the God of the Universe sees ME (along with really seeing and caring for each person in this world) and I am humbled and honored and I worship him at the thought of him caring about little ol’ me.

Have you ever felt insignificant? If you do, then know that you are being noticed. You are loved. You are LOVED!!

That is fairly mind-blowing stuff.

My goals? Sure I have some!

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My Goals for 2014
1.  Kiss my man more.
2. Train for a 5K again and hopefully run with my family in an event.
3. Spend less time online and more time writing. I have some writing goals this year.
4. Organize my bedroom and keep it that way. The rest of the house…well, I will work on it but no promises.
5. See if a short-term mission/humanitarian trip is feasible for me THIS YEAR.
6. Be more involved in playing with the kids and not just let them play without me. I should have fun too!!
7. Memorize a chapter of the Bible and spend regular prayer times with my Best Friend.
8. Deepen my friendships and spend more time with them. Call my long-distance friends once per month, at least!
9. Plan a date with my man every month and be creative (it’s really difficult where I live, but there’s gotta be¬†something!!)
10. Sing more. Laugh more. Enjoy life and all the blessings all that much more than I do right now.
11. Invite my neighbors for a BBQ and see if they come.
12. Live the life Christ has set out for me with enthusiasm, direction,  and joy.

Motivation to get back into it!!

English: an exercise of rotator cuff

English: an exercise of rotator cuff (Photo credit: Wikipedia)

So much about life is temporal. Just when you think you know what you are doing, life does an about-face and you must learn how to deal with whatever it is this time that life has thrown a curveball into.

Just when I thought I’d gotten the¬†inspiration ¬†to exercise tucked in close to my heart, it went and changed its mind. Motivation is a tricky little beast! Why can’t I seem to want to get on the ol’ elliptical like I would get out there and run, back in the summer? I mean, I was not eager, per se , but I went and I did it even if I wasn’t 100%. I think it was the sun or the warmth or getting out of the house for a little while. Those are all motivations for me. It worked. I progressed more than I had thought possible and ran that 5 km. I didn’t run it well, but I did it.

Now, why oh why can’t I just get on that elliptical beast? I was¬† intent on keeping my muscles that I had built over summer I was¬†fierce about fostering¬†my endurance.¬†¬†I was also determined to keep the kinks out.

Then two bouts with the¬†flu happened this fall.¬†¬†Homeschooling the older kiddos got distracting. Then there is the weather. ¬†I could call them all excuses but I won’t. I’ll just call them “life”. A big part of my life is the Chronic Pain, but that is getting better little by little. Fatigue has been one of the sneaky fellows that comes and drags me down¬†when¬†I least expect. When living with Chronic illness, life really can do a 180 and you need to adjust expectations.

Obviously “life” and I have a few things to negotiate.¬† Since aging and muscle strength are both telling me I better get back in line, I should probably listen.

My new challenge is doing something I hate INDOORS. I can neither get out to “enjoy” the weather (as cold temperature¬†is painful and roads that are slippery¬†are not cool with me) I need to embrace the indoor exercise that¬†I can do. I should probably look at it as a possible gym class for my Home Schooled kids.

Enter in responsibility. I have the responsibility to myself, to God and to my¬†family to keep the mobility I gained last spring/summer. I don’t want to go back now.

I learned this summer that I need to do a few things to make myself more apt to succeed. The right gear, the right timing and let my body tell me when it’s one of those days I truly shouldn’t push it. The trick is to push my body when I can!

My basement is cold (remember I hate cold)¬†and since¬†it is where we have room and the equipment, I need the right clothes to deal with that. If I’m not too cold, I’m good.

I need the right music. I’ve downloaded some better running/exercising music.

Most of all I need God.¬†¬†I need to let God be¬†a part of the¬†inspiration to get back into a healthier lifestyle. He has been silently cheering me on and I can’t let my best cheerleader down! I know he will give me strength.¬†¬†I’m not that far away from the discipline and positive effects of running that I’ve put the memories of the accomplishment in the past. It must become my present as well as future goal.

My plan is to stay healthy enough to bounce back into running when spring commences it’s lovely season. There are a couple of things that could change my plans like…. a probable rotator cuff injury or a significant injury to the area that might need to be dealt with…but I will continue to think of how I can keep myself in a state of health that keeps me going. We’ll work with whatever life throws at us. “God is our refuge and strength very present help in trouble.” Psalm 46:1

Who is in to run with me in something local? I don’t want to do the cold and muddy one, but I would like to do something in the spring. Ideas are welcome!